Ryan is an extraordinary boy; he is now 11 years old and in his third complete remission from Stage 4 High Risk Neuroblastoma.
In September 2012 Ryan received potentially life saving treatment which was not available to him in the UK. This was made possible by the NCCA UK and with fundraising support of our friends, family and the general public.

Ryan's story

Ryan was diagnosed with Stage 4 High Risk Neuroblastoma N-MYC amplified in July 2008. He was out of treatment for just over a year when in November 2010 our lives were again turned upside down when we discovered the disease had returned in his bones and bone marrow. After a year of treatment re-staging scans in November 2011 showed that he had again achieved remission.

However just 3 months later, in February 2012, end of treatment scans gave us the devastating news that the disease has returned, this time with a tumour near his spine. In March Ryan started 4 weeks of radiotherapy followed by chemotherapy which is on-going. Re-staging scans in May and August showed no evidence of disease. On the 4th September 2012 Ryan received treatment in Tubingen for a haplo-identical stem cell transplant. He is a happy, active boy who is now enjoying life to the full.

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Ryan's story

We first realised that something was wrong
with Ryan when he started complaining of tummy ache, he had been constipated
for a week or so and after taking him to the doctors he was given
laxatives. The tummy aches continued to
get worse and Ryan would sometimes be rolling around in pain. He would also hold his back and tell us ‘Back
hurts’. His symptoms continued to worsen and then we noticed that one of his
sides bulged when he laughed or coughed.
This got us the ultrasound that eventually led to his diagnosis. The bulge was nothing to do with the disease
and was a weak tummy muscle. We had been
visiting the GP for weeks before we eventually got referred to hospital and by
the time he was diagnosed Ryan had a 9cm by 11cm tumour between his kidneys,
encasing his aorta and resting on his spine.
The disease had spread to his lymph nodes, bones and his bone marrow.

Between the age of 2 and 3 Ryan received 70 days of
intensive chemotherapy, an 11 hour surgery, high dose chemotherapy followed by
a stem cell transplant, then 14 days of radiotherapy and 6 months of
cis-retonolic acid. Ryan finished his
treatment the day before his 3rd birthday, he was well, happy and
active for about a year and at the age of 4 we had our first family holiday
abroad.

A week after returning from holiday routine tests showed
that Ryan’s urine catecholamine’s were elevated, they were repeated 2 weeks
later and again were elevated. Ultrasound
and x-rays were clear but an MIBG scan was arranged to be sure nothing sinister
was going on and devastatingly this revealed the disease had returned in his
thighs, pelvis, throughout his spine and in his bone marrow. Our lives were again turned upside down. Ryan underwent 6 courses of TVD chemotherapy,
each time experiencing the painful side effects of mucusitis, he then had MIBG
therapy at UCLH. This left him with
minimal residual disease and so he was able to have anti-GD2 immunotherapy with
IL2 which we had in Greifswald, Germany
as he did not qualify for the UK
trial. We were thrilled when the
re-staging scans done in November 2011, at the beginning of the 4th
cycle of immunotherapy, showed that Ryan had achieved remission – his body and
his bone marrow were clear of disease.

Just 3 months later in February 2012 we had end of treatment
scans and received the devastating news that the disease has returned, this
time with a tumour near his spine. We have been told that if the tumour grows even another millimetre then Ryan could have a stroke, his consultants in the UK and Germany have agreed an immediate treatment plan of radiotherapy and chemotherapy, and will try and harvest Ryan's bone marrow which opens up more treatment options but our aim is to take Ryan to Germany
for a Haploidentical Stem Cell transplant.
A recent conference held in Tubingen
has shown results of this treatment to be very promising and gives us hope that
he can beat this monstrous disease, the treatment will not be available to Ryan on the NHS and so we have started fundraising. You can read more about the Haploidentical Stem Cell Transplant by following the link below:http://www.nbglobe.com/2012/02/27/tubingen-2012-neuroblastoma-symposium-from-bench-to-bedside/

Ryan starts a 4 week course of radiotherapy in Bristol Children's Hospital on Wednesday 14th March, at the same time he will be given chemotherapy after which the hope is that we can harvest his stem cells which will open up more treatment options.

This blog has been started to share the next chapter in Ryan's life with his friends, family and anyone else who's life Ryan has touched. Ryan doesn't know he has cancer, he doesn't need to know what Neuroblastoma is or how serious the situation is. What he does know is that there is a 'baddie' inside of him that shouldn't be there and more than anything he wants it gone so he doesn't have to keep going to hospital, as his badly misses seeing all his friends. He knows that his mummy and daddy will always look after him and this is all he needs to know right now.

On the 8th of March Ryan went to Bristol to have a mask moulded to hold him still during the radiotherapy treatment. This was the most traumatic experience he has been through in a long time. That forgotten we started the diary the weekend before radiotherapy treatment starts.

What is Neuroblastoma?

Neuroblastoma is a childhood cancer. It is the most common
cancer diagnosed in the first year of life and accounts for around 15% of
cancer deaths in children.

Approximately 100 new cases of neuroblastoma diagnosed every
year in the UK

Of these babies and children, around 50 - approximately half
- will have high risk disease

The long term survival rate for high risk neuroblastoma
patients remains less than 40%

Neuroblastoma is the commonest 'solid' cancer diagnosed in
babies and children.

Neuroblastoma often occurs in the abdomen, usually from the
adrenal glands, which are above the kidneys. Other places it may occur are in
the back of the abdomen beside the spine, at the back of the chest and the
neck.

Neuroblastoma can spread to other parts of the body like the
liver, bones and bone marrow, lungs, skin and brain.

Sometimes no symptoms are present at the time of diagnosis,
and neuroblastoma is the chance finding in a medical examination of a well
baby. The first symptoms of neuroblastoma may be related to the presence of a
primary tumour, which depends upon its location. Tumours situated in the
abdomen may cause a swollen belly, stomach pain, constipation, or diarrhoea.

A tumour in the chest may cause breathing problems, often
similar to a chest infection. A tumour resting on the spinal cord may cause
weakness or difficulty walking.

Sometimes neuroblastoma is diagnosed a result of symptoms
caused when it has spread to other parts of the body. This is called metastatic
disease. These symptoms are often vague and can include fatigue and loss of
appetite. Some children experience bone pain, some may have unexplained 'black
eyes' or bulging eyes.

Many of these symptoms are similar to those of other more
common illnesses. Unless a parent or doctor discovers a lump, a diagnosis of
neuroblastoma may not be initially considered.

Neuroblastoma may occur at any age. It may be present at
birth, or even be diagnosed on a scan during pregnancy. Most patients are of
pre-school age, the average age for diagnosis of children affected by
neuroblastoma is two years old. Neuroblastoma can also occur in older children
and teenagers, or very rarely, in adults.

3 comments:

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My child was diagnosed with neuroblastoma and some complicated nerve tissue infections Luckily we hadan encounter with Dr Jose, a renowned Italian doctor that helped him overcome this cancer and other infections in less than two and a half months, just with the use of herbal medicine and spiritual help, i can now boldly say He is cancer free and a proud living testimony,Dr Jose is known to be able to tackle any type of cancer found in the human body, God forbids any one should suffer here on earth, thats why I believe he created all these herbs, if you also want to clear your doubts and fight cancer to the barest minimum, take the bull by the horn and avoid death, you can contact our Doctor, by his email joseherbals28@gmail.com

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